The FSH Society is excited to announce a special event in Cambridge, MA on June 20th in celebration of the third annual World FSHD Day. This event marks the official launch of the New England chapter of the FSH Society and is open to all patients and families in the New England area, as well as staff and researchers engaged in FSHD research and clinical care. We invite you to join us to learn about FSHD research and enjoy a cruise along the Charles River as the Zakim Bridge is lit up orange in honor of patients and their families.The event is being generously sponsored by Acceleron Pharma and the Wellstone Center for FSHD Research at the University of Massachusetts Medical School.

The event will begin with an educational reception and casual dinner at the Acceleron Pharma Corporate Office. Beth Johnston, Chief Community Development Officer of the FSH Society, will provide an overview of the new FSH Society Community Development Programs. Alec DiSimone, PhD, of the Wellstone Center for FSHD Research at the University of Massachusetts Medical School, will provide an overview of research toward treatments at UMass as well as at companies and institutions in the Boston area. Kristin Zwickau, the leader of the New England chapter, will speak about the mission of the chapter and her plans for the future. We’ll have plenty of orange slices to take your Orange Slice Selfies!

Following the reception, join us for a 2-hour river cruise, where we will have a spectacular view of Boston’s famed Zakim Bridge as it illuminated in the official orange color of World FSHD Day. Everyone is encouraged to snap photos and share them over social media. This is a great chance to raise awareness, learn about the latest developments in FSHD, and connect with other members of the FSHD community. Refreshments will also be available on the boat.

We hope that you can join us on World FSHD Day at this special event as we recognize patients, their families, and the progress being made toward finding treatments and a cure for FSHD.

A full agenda and additional details can be found below. To participate in this event, please register by Tuesday, June 12th with Robyn O’Leary (robyn.oleary@fshsociety.org or 781-301-6042).

UPDATE: The dock is at the backside of the mall directly outside the food court. We will be utilizing two vessels, the Longfellow (wheelchair accessible) and Lexington (requires navigating some steps). We will meet by the Longfellow to make sure everyone who requires an accessible vessel is accommodated along with family, friends, and additional guests. The remainder of the group will be escorted to the Lexington, which will be docked about a 3-minute walk away. Download map of Charles Riverboat Company location.
Download Galleria Mall Map.

Parking is available in the mall’s main garage at 100 CambridgeSide Place or in the side garage on First Street. Parking is $4 with validation by Charles Riverboat Company.